Too often, people don’t die in the setting of their choice; don’t have advance directives in place; or medical orders when appropriate. Many fear dying in pain and without dignity or control. We can – and must, do better.

Medicare plans to do better by reimbursing physicians for having conversations with patients about the care they receive in their final days when they may lose the ability to speak for themselves. The proposed rule is expected to take effect in January.

Patients nearing the end of their lives often worry about having their wishes honored regarding the type of medical treatment they want to receive or avoid. These patients fear that if they can’t speak for themselves, well-meaning family members or health care professionals may authorize extraordinary medical interventions that may slightly prolong life, but not its quality. That’s why it’s important for physicians to initiate conversations with their patients who are seriously ill or frail, to discuss and appropriately document goals for care and individual preferences. It is equally important to make sure family and loved ones are aware of the patient’s wishes.

Since 2001, Excellus BlueCross BlueShield has been training physicians and other clinicians on how to initiate these conversations and complete the required documentation. Since 2009, our health plan has reimbursed trained providers for conducting these discussions as well as well as telephone conversations with out-of-town family members to ensure they are aware of the patient’s goals for care and preferences for treatment. We believe reimbursement incentivizes providers to incorporate end-of-life discussions into regular practice for seriously ill patients and prevents potential conflict by ensuring everyone respects the patient’s wishes.

Our model supports New York's Medical Orders for Life-Sustaining Treatment (MOLST), an eight-step process spanning multiple sessions that allows seriously ill or frail patients who are likely to die within the year to talk about what matters most and choose interventions they wish to receive and/or avoid. The physician completes a MOLST, a set of medical orders that physically travels with the patient throughout all levels of care or uses the electronic eMOLST to complete the process and form online and ensure the patient is included in New York’s eMOLST Registry which can be accessed by medical professionals across the state.

Medicare’s intention to reimburse physicians for initiating end-of-life discussions will result in even more people avoiding unwanted medical interventions.

Members of the public are encouraged to submit comments on the proposed rule by September 8. Submit electronically through the federal register or send written comments by regular mail to Centers for Medicare & Medicaid Services, Department of Health and Human Services, Attention: CMS-1631-P, P.O. Box 8013, Baltimore, MD 21244-8013.

For the growing number of individuals who have had early advance care planning discussions, the first conversation is often difficult. Follow-up conversations are easier when it is recognized that it is as much about how you want to live and what matters most to you.

Stories or narratives have been shared in every culture as a means of education, cultural preservation and instilling moral values. The Community Conversations on Compassionate Care videos are a series of stories that aim to help get the conversation going and to empower individuals to take action.

Bill’s mom spoke to her family about what mattered most to her and put it in writing. She believed talking about death doesn’t make it happen. She was adamant about sharing her values, beliefs and preferences for treatment and viewed it as a gift to herself and her family. Learn more about
Bill & Debbie's story

NO. Under the New York State Public Health Law (NYSPHL), only a physician can sign the MOLST (page 1 & 2) and sign the review & renewal of MOLST orders (page 3 & 4.) Nurse practitioners (NPs) and physician assistants (PAs) CANNOT sign DNR and/or medical orders to withhold and/or withdraw life-sustaining treatment WITH or WITHOUT the MOLST. NPs, PAs as well as social workers, nurses, chaplains etc. can participate in the MOLST disucssion. Ultimately, the physician is accountable for MOLST, the set of medical orders created as a result of thoughtful discussions of values, beliefs, goals for care and shared, informed medical decision making.

eMOLST Champion:Nancy Girard, D.O.

Nancy Girard, D.O. is the poster child for primary care physicians who take the time to discuss end-of-life wishes with their patients. Dr. Girard, the only clinical person in her office in Alexandria Bay, created more than 300 MOLST forms in eMOLST since the summer of 2013.

“I incorporate the advance directive discussion into my patient’s wellness exam,” Dr. Girard said. “I don’t pressure my patients, but I tell them real stories of other patients whose wishes were not honored because the paperwork was not done.”

Her systems based approach will be rewarded by the new Medicare proposal to reimburse physicians to ensure the experience of death is more in line with the way people say they want it to be.

After Dr. Girard attended MOLST/eMOLST training to qualify for the improved reimbursement model, she integrated screening questions to identify MOLST appropriate patients in her practice as part of her work flow.

Dr. Girard simply takes the time to have thorough conversations with MOLST appropriate patients and enters the patient’s values, beliefs and goals for care based on their current health status and prognosis into eMOLST during the discussion. She reviews each item on the MOLST, employing a shared decision-making process to document the type of life-sustaining treatment patients wish to receive and/or avoid. She gives them a printed pink form when they leave.

Medicare’s plan to reimburse physicians for advance care planning discussions is an important step in changing the culture surrounding end-of-life discussions. As well as recommending financial incentives for discussions, the IOM Report Dying in America Recommendations include additional policy changes that “encourage all individuals, including children with the capacity to do so, to have the opportunity to partici¬pate actively in their health care decision making throughout their lives and as they approach death, and receive medical and related social services consistent with their values, goals, and informed preferences.”

In other words, initiating advance care planning early is relevant at all ages, not only seniors or individuals with advanced illness. Children with serious illness and their families also deserve timely, accurate information and support in shared decision-making. While challenging, the communication and shared decision-making process is rewarding and the ultimate in professionalism.

New York's Approach to Advance Care Planning in the Pediatric Population was originally published in the National Hospice and Palliative Care Organization (NHPCO)’s ChiPP’s e-Journal in May 2015. ChiPPs stands for the Children’s Project on Palliative/Hospice Services and serves as NHPCO’s pediatric advisory council. NHPCO has granted permission to reprint this article.

Advance care planning for children differs from advance care planning with older individuals, as it depends on the stage of child development, which affects communication and the patient’s understanding of illness and death. Further, there are differences between children’s diseases and causes of death, as well as greater involvement of family members as decision makers; and the emotional impact of the child’s illness on parents and siblings.

The typical barriers to conducting advance care planning in the general population are also present when the patient is a child or adolescent-reluctance to discuss dying, cultural norms that support family-level decisions, clinician time constraints, unpredictable disease trajectories, and insufficient clinician preparation to conduct such discussions.

No age group is immune from acute illness or injury, complex chronic conditions, or death. Improving communication and advance care planning is critically important for all ages facing the end of life, including children and adolescents.

Additional articles on advance care planning in pediatric hospice/palliative care can be found in the two-part series published by the ChiPP’s e-Journal: Part 1 - Feb 2015 and Part 2 - May 2015.